Welcome to my new avenue to advocate

Info & my personal thoughts about advocating for Myalgic Encephalomyelitis

Updated Nov 20, 2023

As I live with ME, my posts will occur as I am able… and as coherent as I can make them.

All posts at this time are free.

This devastating and debilitating disease has been mischaracterized for decades.  In future posts I will share information about the science of ME as well as my opinions about how the history led to systemic/institutional bias that has marginalized and caused harm. This harm has included a level of suffering most are unaware of including deaths to far too many who share this disease through no fault of our own.

I will share my experiences of coping with the symptoms that changed my life and the lives of those around me. I will also share my understanding of what is happening around the world based on conversations with patients who are similarly affected. I think it is especially important Severe ME patients’ voices are part of any conversation about ME.

I will share my opinions about how government agencies, in collaboration with insurance companies, have taken the path of vague criteria to minimize cost of testing and treatments for people with ME causing great harm.  Similar to what is being seen in the approach to Long COVID. 

Much of the information I share is based on the International Consensus Criteria for ME and the International Consensus Primer for ME. See HERE for links to both in multiple languages.

About Me 

Rare visit to a park with family. Logo from public Facebook group.

I had sudden onset of ME in 1989. My experience of ME matches closely with the description from the experts who wrote the International Consensus Criteria (ME-ICC) and the treatments I have found that help me manage are similar to those described in the 2012 International Consensus Primer.

Some ways to get to know me:

• Video about my advocacy for the Remarkable Women contest (2020)

• Interview with Llewellyn King about MEadvocacy (2019)

• Article about attending NIH conference - includes video clips of my asking questions. (2019)

• Podcast with Standing Up to POTS about dealing with Postural Orthostatic Tachycardia Syndrome while having ME. (2021)

• Interview on the Post-exertional Mayonnaise Podcast discussing grief and living long term with myalgic encephalomyelitis. (2023)

• Member of the advisory committee at www.MEadvocacy.org

• One of the editors at ME Global Chronicle. See latest Table of Contents HERE.

• Founded the ME-ICC & other marginalized diseases public group on Facebook and private Facebook group ME-ICC Info

• Bluesky at @colleensteckel.bsky.social

• Twitter at @KCSteckel  (Limited activity)

• Threads at Colleen_Steckel

• Mastadon @ColleenSteckel@disabled.social

As part of my advocacy I collaborate with others to create informational documents.  This Table of Contents document has links to many useful documents and will be a updated as new information becomes available. 

My hope is the systemic bias toward all marginalized patients (no matter what diagnosis they have) becomes a thing of the past.

Colleen

PS: Nothing posted by me or those commenting are to be considered medical advice.  

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